Most important thing first: I have no idea why I did not notice this until I was actually in the room with Dr. Ambinder, but…
Yeah. One of these men cures cancer. Possibly both. Depending on how you feel about Rich Rodriguez.
Unfortunately, I couldn’t get over this during our meeting, and I failed to ask any lymphoma-related questions, instead asking Dr. Ambinder if he planned to focus on Midwest recruiting and whether he truly understands the Ohio State rivalry.
Anyway: I went up to see Dr. Ambinder at Johns Hopkins on Friday. While I was up there, I did other cancer-monitoring things – blood work and CT scans.
The big issue is the same big issue we’ve been dealing with all along – whether or not to do more treatment. And really, I’m sick of doing this whole dance. I wanted to formulate a plan and start executing it immediately. No more playing grab-ass with five doctors in four states.
Well, I succeeded. I now have a plan, and I’ll be executing it quickly: I’ll be back in chemotherapy on Wednesday.
Now the details: The type of chemotherapy I will undergo is called “intrathecal prophylaxis.” Could also be called “CNS prophylaxis,” “Intrathecal chemotherapy,” “spinal tap,” or my personal favorite, “lumbar puncture,” which will be the name of my band if I ever start one. They are all the same thing. The important stuff:
- As the word “prophylaxis” implies, this is preventative chemo. It’s not in response to anything specific that doctors found. It is a very common treatment for Burkitt’s lymphoma to address the relatively high rate of relapse in the central nervous system. That is something nobody wants to happen. This should significantly reduce the chance of that happening.
- The “intrathecal” part means that the chemo drugs are injected directly into the spinal fluid. It’s about as fun as it sounds. But it also means that this is not “systemic chemotherapy” – the type delivered to your bloodstream via IV.
- The procedure is primarily diagnostic, not therapeutic. By this I mean that the main purpose of the procedure is to check the cerebrospinal fluid (CSF) for malignant cells. In this sense, this is very similar to the bone marrow biopsy. However, the issue with checking the CSF is that it will take numerous punctures to collect enough CSF to perform an adequate analysis. So the thought is, while you’re poking around in my spine, why not just shoot some drugs in there while you’re at it. Hence, the “prophylactic” part.
- I’ll have about six injections on no fixed schedule. Six is a rough estimate, but if everything checks out – scans look good, blood work is fine, and CSF is clean – six should be good enough.
- This is not “chemo” like what I went through this fall. It is not even close. I’ll really have no major restrictions. My hair won’t fall out. It won’t destroy my blood.
- Side effects are primarily headache and nausea. Although these are not caused by the chemo drugs, but by the pressure changes caused by leaking CSF. Many people experience no headaches; many experience some headaches with varying levels of intensity. It’s common to have pretty bad headaches following the puncture, and this will be the only real restriction on my activities for the next few months.
So I guess that leaves one major question: Why did I choose to do this? The answer is simple: I am convinced that the benefit of this treatment greatly outweighs the risk.
I have been leaning this way for a while, and my feelings were only confirmed by my meeting with Dr. Ambinder. He prefaced the entire conversation by noting what every doctor has said: This is an odd case, there’s no “right” way to proceed here, it’s all a “best guess” sort of deal, and so on. But that’s neither here nor there. The question is what to do right now.
And Dr. Ambinder was adamant that this was the right way to go. I’m much better at question-asking now, simply because I know so much more about the situation. But the fact of the matter is that Burkitt’s lymphoma (I think we’re operating under the assumption that that’s what I had) has a high rate of CNS relapse, and it is not fun to treat if that happens. Dr. Ambinder placed my chances of CNS relapse at about one-third; this was in line with what Dr. Al-Katib wrote in his doctor’s notes (which I acquired a couple weeks ago), and a little higher than Dr. Li’s estimate.
That’s too high for me. CNS treatment reduces that chance significantly. And given the relatively low risks of the treatment, I think this was an easy call.
I’m certainly a little frustrated that I didn’t make this decision earlier, but then again, nobody was really advocating just the CNS prophylaxis until Dr. Advani (Stanford) spoke with Dr. Li and came up with the most recent plan that led to this decision getting punted to March. Five doctors essentially said, let’s wait until March and we’ll decide what to do then. So I did that. I guess my minor disappointment is more hair-splitting than anything else.
As for the monitoring stuff – I won’t know the final results of everything for a few weeks probably. I’ll know about the results of the scans and bloodwork soon. Hopefully by Wednesday. If, as expected, they all look fine, we’ll be good to go with treatment. Then, my CSF will be analyzed every time I get treatment. If any lymphoma cells show up there, we’ll have to tweak the treatment regimen.
But all of that will be handled one step at a time. Again, the expectation is that everything is fine (which is not comforting to me at all, given my history) – indeed, five doctors were comfortable enough to say, “Wait until March and then see what’s up.” But it’s good to finally have a plan. And, for the first time ever, I can actually envision a quasi “end” to this whole ordeal.
And to be honest, despite the fact that I will be “starting chemo” again on Wednesday, this doesn’t really bother me. The main reason is that this course of treatment won’t even compare to what I went through this fall. But I also expected this. I never let myself think that this was “over.” Even when I talk about getting back to “normal,” I don’t delude myself into thinking that I’ll ever be what I was before I was diagnosed. This thing fundamentally altered my life. It’s a lot easier to deal with that fact if you don’t try to delude yourself. My ability to be “normal” went out the window on July 30th (possibly July 30th, 1985 if you ask some people). I came to accept that fact a long time ago, so it’s no big deal now.
So really, all I have to do is drive out to Baltimore once a week for a month or two, and that should hopefully significantly improve my already-good prognosis. I don’t consider that a bad thing. You might look at me and feel bad; I look at others who aren’t as lucky and feel good.
Many more details to come on this whole thing.